Church. Part 4: The Rest of the Story...Serving and Small Group (without complaining)

People that are following Christ will grow and change. Ministries that are led by God will grow and change. So since we first visited the church that had a place for Lilli three and a half years ago, a lot has happened. The first three posts about our church experience were only the beginning. I think it is important for readers interested in this issue to know that simply having a place at your church for children with special needs is important and needed. And it will be a blessing to everyone in your church body - mostly the volunteers I would say. But, it is not the end of the story. It is just the beginning....

This is our "serving and small group" story.


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Continuing from Church Part 3: The Church that Had a Plan

Why we Kept Going Back

Our family had been attending this church for several months. Lilli did great in the special needs class, and Chloe loved going to church because it was fun, and she was learning about Jesus on her level, as a three year old can understand. Then we had baby Josh, our third child. We were continually surprised at how much thought and planning this church had put into the smallest details. We brought newborn Josh to church and discovered that there was an entire area just for nursing moms. I sat in a comfortable rocking chair in a completely private area, and watched the service on my own tv while I took care of Josh. Go ahead, ask me, because I know some of you moms are thinking it... why I didn't just stay home and watch it online in the comfort of my own home? Because I wanted to go to church with my family. Because I need community. I need contact with the outside world. Because I want to go to church and be there with my husband and with other people. I want to participate in some way, and be a part of it, even if I have to do it in a different way. (You can apply this analogy to anyone, especially people with disabilities. How ironic.)

In this private area, a female volunteer always came back to check on me and see if I needed anything, every single single service. There was a changing table with wipes nearby. Next to me on a small table, there were thoughtfully placed granola bars and water bottles. It was nice. I felt loved. (I just feel like I should add that this is a load-in, load-out church. That means someone carried those rocking chairs and all that stuff in just for nursing mothers - every week.) We went to church together as a family, and I still got to be a part of the service. I did not have to sit in a silent, empty room (or worse yet, in a bathroom while toilets flushed) staring at the wall while I waited for the baby to eat. That, I had experienced many times before.

I would argue the whole "staying home because it is too hard to go to church" opinion forever. And as usual, I think that could be another entire post. So I will move on....

One thing about this church was that they seemed to try and think of some small inconveniences that might hinder a person from coming. I felt extremely blessed to have found a church that had both a place for our daughter with special needs, and a place for nursing moms. Everything else was just bonus. See, it really does matter when people can't simply attend a church service because there are no accomodations for them, or for their children. Some churchgoers complain about things like lighting, or worship style and music, and it seems so absolutely frivolous to me. After the last nine years with Lilli, we see that just the simple fact of being there is a blessing. If we are blessed enough to be able to attend a service as a family, we would never dare complain! If hypothetically I weren't too fond of a song, I'd keep it to myself. I'm fortunate enough to even BE there choosing whether to sing it or not. It's not about me. I am there to worship my God, and I am so very happy to be there. (The bonus for me is that I happen to love the worship songs at my church.) In the Christian world, there always seems to be the small crowd of cranky complainers. Complainers about things in their own churches, and complainers about things in my church. But if you are one of those complainers, ask yourself if your church would have a place for my family. Child with special needs, nursing mom, and all. Not just a "place," a thoughtful place. If you don't, now you see why we kept going back to this church, without complaining.

And we decided to join it.

Joining, and Figuring Out How to Serve

In our church, we don't call it "membership," we call it "ownership." Because members have rights, and owners have responsibilities. So as a new "owner," we attended an "ownership class" and met with people to decide where we would like to serve. All of the serving area responsibilities were clearly described on a hand-out that we were given during a presentation, and then we were divided up to meet with someone to pray and decide where we would like to begin serving. This is where my "special needs parent" story comes in.

As I looked carefully over the list and at the time and description of each church job, I began to feel overwhelmed. I could not figure out when or where I could serve, because of Lilli.  I could not serve in one service and attend another - Lilli could not last that long in childcare. We could not split up and come at separate times to serve - We live a half hour from the church, and my husband and I are a team. We need each other when we bring our children to church. Getting from the parking lot to the check in station with our children is often like playing "pin ball" with three balls at once.

When you have a special needs child with overwhelming needs and care, sometimes it just consumes a person. It's your whole life, it kind of seeps into every single area until nothing that's "just you" is left. With a five year old that had seizures, could not talk, was spoonfed pureed food, wore a diaper, had walking and balance issues, and slept in our room with a blinking monitor all night because of her seizures, we were drained. On top of that, we had a three year old, and a needy newborn. Jasen was in a full time doctorate program. I think that was why we felt like I could not figure out how, or where to serve in church. I was depleted in every way just by serving my children all day and night. Three and a half years later, some things have changed. I remember that back then, Jasen and I were both burned out and stretched extremely thin. (Now we are back to just being plain old exhausted and slightly overwhelmed, but we're good with that.)

I was paired up with my "ownership partner." I sat across from a sweet young woman with blonde hair, and she asked me about how I met Jesus. I told her my story, and then we started to talk about the different areas of serving, and what I was interesting in trying.

I thought about what I had to offer. It didn't feel like much nowadays. Years ago, (in another life) I taught Sunday school. I worked in the nursery. I sang, played the guitar, helped with planning the service. I had done a lot of different things in the past that I could not figure out how to do now because of Lilli. I'd become a different person. I felt like I was drained dry and had nothing left to give on Sunday mornings.

That was when I was blindsided with an embarrassing, out of nowhere, flood of emotion. In a room full of people I did not know. I felt the tears coming to my eyes and thought, oh no, What? Come on, don't cry, no, not here, get yourself together! 

"I'm so sorry," I explained, absolutely mortified at myself.  "I want to serve... I just....I can't figure out how I can serve, because we have a daughter with special needs and she can't last in childcare for that long..." I fumbled to explain my odd emotional reaction to the list of serving descriptions. How embarrassing. How could I explain my very different life to a complete stranger in a minute or two? I couldn't.  I told her a little about Lilli. I tried to sum it up by explaining that whatever I did, it would have to be something that would work with Lilli.

Because absolutely everything we do in our lives depends on Lilli's needs and care. Her seizures. Her...everything.

I glanced across the room at my husband, who was smiling and laughing with his ownership partner. Goodness, I was such a mess. I wondered what he was picking off his list over there, cause his issues were the same as mine. Except for the hormonal-nursing-mother-woman part.

I looked over the list again, and she suggested the Prayer/Care Team. As she explained the team to me, I began to envision how I could serve in that way. Yes! I was relieved. I could do that! I went over and pointed it out to Jasen, and he decided he wanted to serve on the prayer team too.

This is why meeting with another person - a woman - one on one, was so important. I could tell her about my life, and she helped me find a place where I could serve. If I had just been expected to sign my name on a list somewhere and show up, well, it would never have happened. I needed that extra guidance to help me see that yes, I am able to serve. Just not in a traditional way. And why is it so important to serve? some of you may wonder. I mean, come on, look at how needy we were, you'd think I would just say that we needed to BE served, not serve others, right?

Wrong. I can't explain serving to you like a pastor would. I can tell you that when I serve others, it gives me joy. It takes my focus off of myself and my little world and my own problems. I might be exhausted before I get there, but I love it while I'm serving. I am a part of it all. It is actually exhilarating to me. I can help someone else, instead of being helped. That is a gift to me. Serving others is not a chore. It is a privilege. All I can say is if you are serving and it feels like a chore, you might want to change how you are serving. I can't think of a much better feeling than serving others, and if you don't feel joy, you're doing it wrong.

Serving through Prayer

At first, Jasen and I became a part of the "Prayer Team," and prayed throughout the week for all the many prayer requests that came in from people during the service (the little cards you can fill out and drop into the offering.) The team met for a few minutes before the service to touch base, but the real serving happened starting Sunday afternoon at home, when the prayer requests were emailed out to us. The prayer team leader would type them all in and send them to the team members. Then we would pray for the requests all week long, and contact the people we were praying for to let them know that they mattered, and that real people were specifically lifting their requests up in prayer.

Praying for others? No problem! This I could do while I was taking care of baby Josh, pureeing Lilli's meals, driving her to therapies, in the middle of the night with an awake child...it was an important job that this multi-tasking mommy could definitely handle.  It was perfect for us. A few times I even got to serve on the Care Team during the service and pray with people in person, and I loved that.  It was great to finally be involved and meet new people in our new church. Many times, there were prayer requests from us. And now we knew the people on the team that were praying for us.

Families who have children with special needs might feel like they cannot serve. Sometimes it is simply enough that they can get their family to church. I think a church should take care not to pressure these families to serve or make them feel bad for not serving. They are in a different category. I don't know how to explain why in a simple way. These parents are not soccer moms or little league dads. They are appointment/therapy/medical-procedure moms and dads.They are living every day just trying to make it through each moment. It's like the exhausting state of mind of having a needy newborn, but as the child grows older, that state of mind never, ever, goes away. And for many parents, the diapers, the bath times, the dressing, the feeding, and everything else never goes away either. It continues on and on, with no reprieve, and the child gets bigger, and heavier. It's just a very different, often difficult life for parents raising special needs children. This you might glean from reading some of my other posts. I could tell a hundred stories about the many challenges of these families. If you spent a few hours at one of their houses... you would understand. That's all.

So let's say these families with special children are coming to church, but they don't seem connected. They come, (sporadically maybe, because their children might be sick or having seizures, or surgery, or again, a long list of reasons that have only to do with special needs)....and they seem interested in being involved, but they aren't connected. Don't give up on them. They need encouragement in a different way. They can serve. There are ways that they can serve, it just might be in a way that does not involve being at the church for two services.  I don't know the answer, because every church is different. All I know is that for us, we wanted to feel connected to the church body, but we had trouble figuring out how. We needed someone to help us see that we are able to serve, just in a different way.

The prayer team was a great first serving job for Jasen and me. But then as things usually go in life, one day, everything changed. God had exciting plans for us through serving at our church.
Please read the next part of the story in my next post: "Small Group and Special Needs."